How did we get here?

In honor of Childhood Cancer Awareness month I have written a (lengthy, at best) story about how we got to where we are now. I will start by letting you know that it is long, it is honest, and it may be hard to read. I do not necessarily want to talk about what I have written, so if you bring it up and I avoid it - please understand. There are painfully honest facts that I have written that I have never admitted to anyone else, let alone myself. I ask that you DO take the time to read this story. Please copy and paste it to everyone in your address book. The more people who know Charli's story, the more who know about childhood cancer..and that, is the ONLY way we can make a difference.

Childhood Cancer Awareness Month

September is Childhood Cancer Awareness month. During this time, we are making it our duty to raise awareness to these horrid diseases that our children have to fight. We would like to preface this with saying that we are not looking for sympathy, however we are trying to get your attention to see what is actually going on. This is a world that many know nothing about.

In July of 2006 our daughter, Charli Ann Preister, was born. She was beautiful…had gorgeous eyes and defined eyebrows at birth! She was perfect, and came home a few days later. We enjoyed loving her and sharing her with our family. She lived with our two dogs who adored her.

When she was five months old, we noticed that she didn’t really want to roll over, and it seemed to make her down right mad! We thought nothing of this. We knew that we didn’t give her enough tummy time, and thought that she was just lazy to be honest!

Shortly before turning 7 months old, she started to “change” personality, or so we thought. I can remember it like it was yesterday – February 23rd she just acted different. When I picked her up from daycare she was crying, we all thought she must have been tired. This behavior continued for a few days. We tried everything. We fed her more, we fed her less, we tried to have her nap more, nap less. It got to the point were she wouldn’t eat and didn’t want to move at all. We thought she had an ear infection, we took her in “she looks great” we were told. We thought maybe she broke a bone somehow, we took her in “she looks fine” we heard. Finally, we were grasping at straws. We thought she had a twisted bowel, strep throat, pulled muscles, etc. We KNEW something was wrong, but we could not find it. After three weeks of being in and out of the doctors office, nights in the hospital, endless hours of crying (both Charli and us!) we took it a step further and took Charli to Children’s Hospital in Omaha, NE. We thought we had lost our bright and happy baby.

The morning we took Charli down, she was actually having a great day, it was March 14, 2007. Within a few minutes of being in the clinic, we were told that something was wrong with her, and that we would not be going home. I felt terrible, why did I wait so long to bring her here? We were told it was either a tumor or some sort, or spinal infection. After intensive blood work, we were able to rule out the infection. Later that day an MRI was done, showing a mass in Charli’s abdomen. We were told that it was “just a mass” and that they had an excellent neurosurgeon that would remove it and everything would be fine. It was more of a pain in the butt, than anything else. PRAISE THE LORD! We were so sad that she would need to have surgery in that delicate area, but we knew something was wrong, and thank God, it wasn’t worse. A few hours later, we got a call that the initial report was incorrect; it was most likely a cancerous tumor. We were told that our daughter had cancer, and it was probably neuroblastoma.

That evening we met with a team of doctors to discuss what would need to be done. Charli’s tumor had wrapped around her spine, and had even started to grow into her spinal canal. On March 16, Charli had her first surgery, the biopsy. We had to wait a week for the final results to come in. On March 22, we received the call. Yes, Charli does have neuroblastoma, stage III, intermediate risk. We were told that chemo would be starting the next day.

We have a great oncology team in Omaha and although we had a rocky start, we couldn’t ask for better care.

Charli had her port put in and bone marrows checked on March 23. The next day, she had her first round of chemo. This was tough weekend for Chad, Charli and I. We were learning about the relentless disease and what could be ahead of us - hearing horror stories, and absolute miracles. We finally came home the next week.

If I am going to continue with this “raw” honesty, I will admit something, something that I just recently admitted to my own husband. I am ashamed to say this, but I will say it anyway. There was a time in the beginning that I honestly did not know what would come of all of this. Reading the statistics and mortality rate, I wasn’t sure what would come of Charli and her diagnosis. I distinctly remember thinking that if I bought things for her to use at a later time, it meant that she would be around long enough to use those things. So I bought clothes that were way to big for her, scrap booking stickers for events that would happen down the road, etc. The one thing I remember buying was a dress that says “One day I will be a fairy princess” I thought, ‘if I buy this…she will make it to “one day”’. I know those are horrible thoughts to have, but it is the brutal truth. Imagine, not knowing if your child will make it through something, knowing that there is a possibility that she won’t – and you can’t do anything about it. Ugh, I am ashamed for thinking it, and embarrassed to admit it – but in order for you to understand…you need to know.

We had to take Charli in to get her blood work done twice a week, at our local hospital. They were great with her. To be honest, she was great for them too! I think she only cried once when they did her blood work…and she was poked probably close to 20 times overall in that office. She is so strong. Chad and I also had to give Charli a shot each night for about 7-12 days after each treatment. It wasn’t fun to give the shot, but it was almost an out of body experience. To be honest, the entire ordeal has been that way. We did what we needed to do.

Every three weeks we loaded up the car and headed to Omaha for the weekend, filling bags of toys, clothes, and magazines for mom and dad. We were fortunate that the doctors let us do Charli’s treatment over the weekends. This allowed Chad to work as much as possible, and allowed my adjusted work schedule to be unaffected. We would leave early Friday morning and get back Sunday evening. Once we were home, we were home until our next trip to Omaha. We were not able to take Charli out and about between treatments for fear of her getting sick while her counts were low because of the chemo. However, each Friday afternoon we did try to visit her friends at daycare while they were playing outside. This was our saving grace, really the only time she got to see other kids, and it made her so happy. However, our family was great about coming down to visit us when they were able.

The worst treatment for Charli was the second cycle of chemo. She got sick and was not herself. The week after being released from treatment, we were down in Omaha again with high temperatures. Charli received her first and only blood transfusion. After each treatment, we could see improvement. She started to want to eat again after the first treatment, but after the second, she lost the desire again. She started eating really well several weeks ago, and now she is a great eater! She lost her hair, although some people still say that she didn’t! (trust me, she did!). At the time, we felt like she was doing great. But, to look back at pictures of her during treatment – you can see it in her eyes…she was almost hallow. She looked pale, sick, and just not “Charli”. It literally breaks my heart to look at those pictures; even now, that she is doing so well. She was a different baby, and I know it was from the chemo – although that is what made her better, it made her ‘worse’ at the same time.

We were told that she would require four treatments, but would most likely need eight total. After four treatments, we were scheduled for scans (MRI) the weekend of what would have been her fifth treatment. Once getting down there, the Dr. decided that in order to be 100% of what our next move should be, we should schedule Charli for a CT scan. After doing this, we consulted with the Dr. about the results. We found out that her tumor shrunk considerably. However, the tumor was still located on her spin. At this point we did not know if it was active or not, and surgery was not an option. Chad and I had the grueling decision of what to do next. We could continue treatment hoping that it would shrink the tumor and/or pull it off her spine; maybe even enough to surgically remove the remaining tumor. However this option did not guarantee anything, it was possible that with treatment the tumor would stay the same. Or, we could do nothing. Just sit and wait? This didn’t sound like a very good option to us, to do nothing. But, after talking it over we decided that the risks of unnecessary chemo were far greater than the risks of closely monitoring her for change. As it stands we go see the doctor every six weeks for scans and/or check ups. So far, we have been beyond blessed with success. Having said that, neuroblastoma is a disease than can literally strike at anytime – and I am not sure we will ever feel safe again.

So here we are. September 2007, Childhood Cancer Awareness month. Charli is walking, crawling, rolling, falling, playing, eating, drinking, dancing, loving, and doing everything a child her age should be doing. She is amazing, and truly my hero. Even when she didn’t feel good, her desire to WANT to feel good overpowered her sickness.

I know this was a long story, but I NEED you to understand this. This isn’t just “a child” that has cancer…it is OUR child, OUR baby, OUR daughter, OUR Charli. This is someone’s granddaughter, niece, cousin, neighbor, friend, and family. This is Charli, and she has neuroblastoma. Honestly, if something is not done for our children who have cancer, our future is literally going to die before our eyes. Childhood cancer is the number one killer of children, greater than all other childhood illnesses COMBINED. And yet, there is practically no funding for it. If we can raise the awareness that it deserves, this will change. Once this happens, research can be funded and a cure found.

There are a ton of breath-taking statistics out there about the lack of funding, the enormous about of children who will be diagnosed with cancer this year, and the number of children who will die because of cancer this year.

This community we have become a part of, Childhood Cancer warriors, has not had a new drug introduced for more than 20 years. Yet, there are new medicines for the common cold all the time.

On average 10 children will earn the wings, loose their battle, to cancer EACH DAY. Do you know ten children? Makes it more real, doesn’t it?

After Charli was diagnosed, I became a part of an online group for Neuroblastoma parents. It has been a wealth of knowledge, support, and help. However, each week I hear a heartbreaking story of a NB child loosing their life to this wicked disease. Can you imagine that?

Childhood cancer doesn’t care where you live, what your name is, how much money you have, or what has happened in your past. Childhood cancer does not care what color your skin is, your social status, your long-term plans, or how important you are.

I believe there is a reason that Charli has had to take this battle on. I am not 100% sure why God gave her this bridge to cross, but I know that He did it knowing that we would work as hard as we can to make a difference. This is why it is important that you not only read this…but you understand it.

Thank you for reading this story in its entirety. We cannot fully put into words what it is like to have a child with cancer, but we try to let you in on a part of our life that is not only difficult and painful, but also incredibly important for others to know about.